Author Archives: sammozart

I do not want to be the one left standing on the shore gazing out to the green light across the bay, like Jay Gatsby. I stated this in an earlier chapter (XXXVI: Farther Away).

Rather, I would go on with my life. Immediately, therefore, and I might add, wisely, I step forward – and trip over something, falling flat on my face in the water. Crawling on hands and knees through the muck to shore, I pull myself together, stand on my own two feet and peel the seaweed out of my hair and off my clothes. I exhale deeply and smile.

I encountered a friend. “You have mud on your face,” the friend said. “I fell in ––,” I replied. I have many good friends, for whom I am thankful, who know me all too well and care about me, special people, selfless, spiritually evolved, who have performed altruistic deeds for the good of humanity and the environment. And I have my writing, plenty to do.

“Why don’t you run for mayor,” suggested the doctor on his visit the other day. “Sometimes I think, ‘Well, if I were mayor…,’” I told him. “But, no.” “Then why not serve on the town council?” he pursued. He is being thoughtful and supportive; but the person he’s talking to is not me. I’m not a controller. I’m interested in culture, the arts, the humanities. I’m a supporter. I am of the We generation, not the Me generation. I forget to think of myself. What do you need? Oh, I can do that.

My point here and reason for repeating in my opening statement that which I have written before, is because – the bottom will drop out; I will fall into a black hole. When Jetta, our teacup poodle, goes and Emma goes, my Hospice friends, with whom I relate to on an intimate basis, will go, like they died, too. Like Indiana Jones, I will have fallen into a pit of snakes.

Life is a battle. Arjuna had an awful mess on his hands, Lord knows.

The doctor and I had a conversation that feels to me like sketches of an unfinished symphony. Who actually answered any question but with the superficial? Oh, of course, he answered thoroughly and knowledgeably all my medical questions. He is a doctor, he told me, because he likes what he does. That is obvious. I would not want any doctor here but him. And I have said so, many times. He is perfectly suited for our situation.

But I want to ask, “Why are you here conversing with me? Are you patronizing me?” I believe he is sincere, genuinely sincere. He is just being him. Yet this is what he contemplates to be his correct action. He will be very wise when he grows older.

Just be straightforward and forthcoming, say what you feel and think, and he most often is. I feel that when so many of these healthcare givers and others I deal with professionally – you know, the customer “care” people – care about whom? – are not straightforward and forthcoming, that either they do not know what they are doing or they are devious. They try to control me by making me feel that they know more about the matter than I, because in fumbling through their scripts they can’t find the right page, and that therefore I am stupid. I’m not that stupid. It’s so unsatisfying and frustrating when having asked a question not to receive a truthful answer. I asked the question to find the truth. I asked a question three times the other day of our car insurance agency office administrator and when she realized she couldn’t answer, she said, “O.K. What’s the bottom line question?” The bottom line question? The one I have been asking.

What’s the bottom line discussion I should be having with Emma’s doctor or any of our healthcare professionals? They act like if I can’t wipe a butt then I lack intelligence. Well, let me tell you, I have wiped a butt or two. That’s how I know where and what the bottom line is. The doctor is being very gentle, compassionate, patient and intently interested, I know. He is doing his best to help. He is sincere. I try to do my best, too; and had I the quick wit, I would have asked him more direct, appropriate questions. Sometimes I just get blown away by it all. I want to stand and gaze at the green light across the bay. It is seductive. It appears so close. I want to reach out and touch. But you see how it works out for me. No matter what I do, I fall flat on my face in the water.

How was your Thanksgiving, by the way? Ours was very nice. I have a good friend, a registered nurse, around my age, who 12 years ago started the Middletown, Delaware, free Thanksgiving dinner. Her children were grown, she was going to be alone and she figured others would be, too, so why not cook dinner for about 25. That number has grown exponentially. She insisted Emma and I have a free Thanksgiving dinner delivered. It was delicious, beautifully presented, gourmet food. The other day, before Thanksgiving, she said she was up to her feathers in preparations and loving every minute of it.

–Samantha Mozart, November 26, 2011

I remember driving on blustery, gray November days with Emma the hour and a half across New Jersey from Delaware to see Aunt Mary. Aunt Mary was Emma’s mother’s sister, my great aunt. She had a little farm in Absecon Heights, just across Absecon Bay from Atlantic City. Walking a half mile down the dirt roads through the reedy marshes, to stand on the little wooden dock at water’s edge, a mix of clams, salt and sulfur permeating our senses, and looking due east across the water, we could see the skyline and lights of Brigantine, on the barrier island above Absecon Inlet, north of Atlantic City. As a child, Emma spent all her summers with Aunt Mary, coming down from West Philadelphia.

Aunt Mary kept cats. She needed good mousers. Emma used to dress them up in doll clothes. Kittens, when they first begin to eat solid food, will stand in the middle of their plate, in their food. We had a health care aide who stands in the middle of her food. About to head downstairs, I spotted the bathroom scale in the middle of the staircase. “Not a good place for the scale,” I said. She immediately stopped looking me in the eye, stopped talking to me, and when she informed me on her way out the door that she was changing her schedule for the next morning, even though I had told her twice that I had plans for that morning and that evening and needed her to come as scheduled, she argued with me: “You’re the boss. You’re the boss!” she repeated. Yes, well, of course. “Will you be here tomorrow night?” I asked her. “Do you want me to be here?” she asked. This two-line refrain got monotonous in its repetition without resolution. I cannot hold a reasonable dialog with her. I did not allow her to change her schedule. So, rather than switching morning for evening with our other aide, I had our other aide cover both. This was a pattern with that aide. Otherwise, she was excellent with Emma. Nevertheless, I could not have this attitude in this house. Fortunately, these negative vibrations bounce right off our Victorian-era house. It’s a happy house that has witnessed the vicissitudes of many seasons. I’m in the market for someone who hasn’t got an evil twin. Yesterday, I hired someone who lives nearby and is highly qualified, to start work today. Today she didn’t show up. I can’t reach her on the phone. Our regular Hospice aide came this morning. Happily, an on-call Hospice nurse, a most kind person, with a kind, trainee nurse in tow, drove through the rain, wind and dark tonight to help.

Driving across New Jersey those gray November days, we were on our way to Thanksgiving dinner. Aunt Mary made the best stuffing, moist and sagey. Even though Emma, my brother and I have the recipe, we have never been able to duplicate Aunt Mary’s; and, no matter where we go or whose we eat, never have we tasted any as good. Aunt Mary always got a live turkey for Thanksgiving. We’d visit her earlier in the season, see the turkey in the pen, and then eat it on Thanksgiving. Aunt Mary raised chickens, too. In the spring, she’d have a new little pen of fuzzy, yellow baby chicks. When they grew up, they laid brown eggs. The rooster’s crowing woke us at dawn. My brother stuck his finger through the chicken wire surrounding the chicken yard. When the chicken pecked his finger, it hurt, and everybody said, “We told you.” He never did that again. Occasionally, Aunt Mary would go out into the yard, grab a chicken, break off its neck and we’d eat the chicken for dinner. I remember her standing at the sink in the back kitchen of her bungalow boiling the chicken and plucking the feathers. Once, Emma got chased by a chicken with its head cut off. She ran up the steps to the back door and the chicken came right up after her.

Aunt Mary had a framed poem hanging on her bedroom wall opposite her brass bed – Alfred Lord Tennyson’s “Crossing the Bar”:

Sunset and evening star,
 And one clear call for me!
And may there be no moaning of the bar,
When I put out to sea, …

I would lie in her bed and read it, wheezing, nearly unable to breathe from asthma from the cats, when I stayed with Aunt Mary for an occasional week during the summers.

In November 1974, my daughter, my dog, Kolia, a friend and I drove from Wilmington, Delaware, to a suburb of Towson, Maryland, near Baltimore, in search of F. Scott Fitzgerald. Fitzgerald is my favorite author and kindred spirit, as I mention incessantly in this journal. We set out on a typical November day – chilly; gray; misting rain; a counterpane of wet, golden leaves spread over the damp ground. I was on my way to find the house at La Paix, the estate of architect Bayard Turnbull, where Scott and Zelda Fitzgerald and their daughter Scottie had stayed briefly, a quiet place where Scott could write and Zelda receive treatment at nearby prominent psychiatric institutions. I had embarked on a journey to touch Scott’s spirit. We did find a big, empty pillared pale-yellow, stucco house there, but it wasn’t the La Paix house where Scott had stayed. That house had been torn down, I learned later. Maybe I did encounter Scott’s spirit; the place certainly evoked the sense of something. The serenity there, the aroma of the fallen leaves underfoot, the mist in our faces, everything listening as the wind whispered stories through the trees: soft, tranquil, compelling me to write.

As a writer, I must capture thoughts as fleeting as twigs fallen into layers of wet golden leaves on old brick sidewalks before the wind stirs them into unsettled interludes.

Fitzgerald rendered much guidance on writing and I gobbled up every bit, copied reams of lines from his notebooks and memorized them. He fed me well.

He found it difficult, as I do, to discipline oneself to sit in a room and focus on writing; we believe the world to be going by without us.

When I lived in Redondo Beach, California, I became friends with the son of author and nutritionist Adelle Davis. She had died a few years earlier. “It’s hard to live with a writer,” her son told me during a visit to her modern, environmentally harmonious home in Palos Verdes Estates with its ideal U-shaped kitchen and the glass-enclosed bridge over the swimming pool, that connected the main house with the bedroom section. “Writers don’t have much time for you because they’re busy writing all the time,” he said.

My favorite living writer, Orhan Pamuk, says he becomes irritable when he is deprived of his daily writing time in his room. I do, too. As I age I find it easier to focus on my writing; indeed I crave my time to write. Like an actor who stays in character while making a movie, when away from my writing room, thoughts of what I would write eddy in the corners of my mind, leaves of many colors. It becomes difficult for me to focus fully on anything else until I can sweep them out of my head and onto the page.

My friend R – R-well, I will call him here – emailed me a copy of George Orwell’s 1947 essay, “Why I Write.” You can find this essay readily online.

What a windowpane into my reasons for writing and my writing style Orwell’s essay is. I am grateful to Orwell for his incisive look at varicolored writing forms and why writers write. Orwell writes: All writers are vain, selfish, and lazy, and at the very bottom of their motives there lies a mystery. Writing a book is a horrible, exhausting struggle, like a long bout of some painful illness. One would never undertake such a thing if one were not driven on by some demon whom one can neither resist nor understand.

As a writer, I am vain, I suppose, in that often I think you are riveted to my storytelling; selfish of my time—irritable because I am kept from my little writing room; and lazy, certainly, in that it’s fun to sit and daydream, listen to the sounds of the words and phrases playing against each other and to see where your characters are running off to with your story. Really, of the latter, I often use my writing as my tree house, a place to escape into, as I do my music – like when I have to deal with an aide who arrives at my door apparently slogging through knee deep mud after a night in the deep forest chopping down trees, in a prelude to abandoning her job altogether. Yes, some irresistible and mysterious demon drives me to write.

I stood outside Sunday, two days ago, with Jetta, our 11-year-old teacup poodle. She can no longer stand much of the time nor walk straight. Her equilibrium is off and she is weak. She falls over and lies on her side. If she can get up again without my lifting her, I praise her: “Oh! See? You rolled over!” This I do because when she was healthy and I would command her to roll over, she’d stand there and look at me as if to say, “Why? That’s a silly trick; pointless, don’t you think? I mean, really, think about it. It’s like when you tell me I have to wait for the turkey until you cook it and then when it’s cooked you say I have to wait until it cools off. Why bother to cook it? Just eat it. That’s far more efficient.” But, now, when she falls over and just has to lie there, she accepts it. She just lies there and I reach down and pick her up and try to stand her on her rubbery legs.

Life involves allowing oneself to release control, to accept and to enter the void. There is not nothing; there is something: see what happens when you come out the other side.

When Jetta and I stood outside that windy Sunday, our wind chimes and the neighbors’ all up and down the block, all different sizes, from the tiniest to the very long tubes, were ringing wildly, an unharmonious tone poem. The sound gave the mystical quality of a hundred Russian church bells.

Bells hand rung in Suzdal, Russia, part of the Golden Ring of Russia. Suzdal dates back to 1024.

It is impossible not to be uplifted into the vibrational frequency of those Russian bells. Bells, you know, have a huge void in the center. The tone of the ringing of the wind chimes lifted me into a kind of acceptance: What ancient mystical stories and truths is the wind telling us through those bells? Recalled for me the sounds of Russian church bells, I have to say that they are the sounds of my soul. I therefore feel compelled to quote from Jane Fonda’s book, Prime Time, “Sooner or later we will come to the edge of all that we cannot control and find life, waiting there for us,” at the door. Fonda continues, “The psychologist Marion Woodman says that with ‘vulnerability lives the humility that allows flesh to soften into the sounds of the soul.’”

Later that day, Tess, our Hospice nurse, unexpectedly brought us a warm, free Thanksgiving dinner prepared by neighbors at our town’s free Thanksgiving dinner at the firehouse. Sweet.

–Samantha Mozart, November 22, 2011

Ringing of Ivan the Great Bell Tower, Moscow (completed 1508)

Kremlin Bells, Moscow, 16 July 2003, 12:00 —
Moscow Kremlin Cathedral Square, Noon-time bells

Russian Orthodox Bell Ringing 7:45 minutes – This one shows beautiful Russian scenery. http://youtu.be/TzGbMWEl0Ys

Daylight has come. I look out my window to find the cinnabar-colored leaves of the dogwood embossed against silver tinged loblolly pine needles half hidden in a yellow-silver drape of fog. Strange, now in November bereft of half its leaves, the dogwood appears farther away from the house. In summer when the tree is dense with green leaves or in spring voluptuous with white blossoms, it lightly kisses the face of our house.

Our house is cold and damp this morning, wrapped in its shroud of fog. The fire siren at the hose company one block over has gone off twice in a half hour. The fog is dense on the highway. I hope the people are all right.

A separation from a loved one is anguishing. Marcel Proust writes in In Search of Lost Time about a young boy who has to go up to his room to bed early without kissing his mother goodnight because she is hosting a dinner party for an important guest. He agonizes over the separation and its coming duration spanning across the long, deep night until morning. She will not come up to his room to kiss him later. He gazes out at her and the dinner party guests from his window. How can he reach her? He contrives to write her a note and send it to her at table through a servant. For that forbidden and unfriendly dining-room, where but a moment ago the ice itself – with burned nuts in it – and the finger-bowls seemed to me to be concealing pleasures that were mischievous and of a mortal sadness because Mamma was tasting of them and I was far away, had opened its doors to me and, like a ripe fruit which bursts through its skin, was going to pour out into my intoxicated heart the gushing sweetness of Mamma’s attention while she was reading what I had written. Now I was no longer separated from her; the barriers were down; an exquisite thread was binding us. Besides, that was not all, for surely Mamma would come.

Mamma did not come. The servant delivered the letter. The mother read it. She did not respond. Later in life, as adults, we may employ such emissary to meet someone. I tried that once, many years ago, and it worked. But once was enough. For, I might imagine, as Proust goes on to write, they’re all at a party, the infernal scene of gaiety in the thick of which we had been imagining swarms of enemies perverse and seductive, beguiling away from us, even making laugh at us, the woman [or man] whom we love. –As out of reach as Jay Gatsby’s green light across the bay. I choose not to be the one gazing out from the shore. From the shore of birth to the shore of death is not so vast a distance, even though I have outlived Scott Fitzgerald by a decade, or two, or so. From the young boy despairing of not having contact with his Mamma over the long night to remembrances of things past that occurred seemingly yesterday, our perspective of time changes as we age.

Changing the current chronology of events vis-à-vis my composing this particular journal chapter, today is November 15; I began writing this on November 7. A train of events has run through this week decoupling my thoughts and making this post late on arrival; I alighted upon some of these events in my previous chapter – to which I yielded midway through writing this one –; others I’ll sidetrack for now, but this: Again yesterday, without notifying us of our appointment change, they sent our regular Hospice team nurse, Tess, elsewhere. Again, I must rationalize (I am good at is making excuses for others) that she was needed more urgently for another patient because she is an outstanding nurse; but this punctures a hole in our team and severs the thread of communication. By the time I see Tess again, next week or the week after or whenever, I may have forgotten where we left off, meaning that in their team meetings they may be discussing scenarios concocted in their heads – as often happens everywhere these days – rather than facts; this concerns me because Emma is up for recertification any day now. If she is not recertified, then her Medicare Hospice support will discontinue. Meantime, our Hospice sent a substitute Tess, if such a one exists, whom I asked to check the bandaged laceration on Emma’s arm. She did. As with all people Emma’s age, Emma’s skin is like delicate tissue paper and tears easily, leaving exposed raw tissue. I am concerned about infection. The wound is healing well. But when the nurse rewrapped the bandage, she wrapped it so loosely that when our aide arrived three hours later, the bandage had slipped down Emma’s arm. The aide wrapped it anew. This aide had wrapped it previously, and the bandage stayed. The carelessness of one nurse makes me wonder about other nurses; and do I really want this nurse to attend me in a hospital?

This afternoon, just as I was going to post this chapter, I encountered Emma sitting up in bed, having thrown off her covers. Her pattern the past two months has been to sleep all afternoon. When I asked her if she was all right, she began talking. Twice in the past two weeks, when our music therapist has visited, Emma has begun talking a blue streak, apparently wanting to get up. This afternoon, she told me, “I think I had a spell.” This sent up flares in my mind. She has said that to me in years past – once when she had her mini stroke and on occasion more recently when she first exhibited signs of dementia, and she would fall or not remember how to do something. I thought her blood pressure was up. I called Hospice for a nurse and Tess came hastily. While we were waiting for her, Emma told me to tell my brother, who lives in North Carolina, said she was cold (I pulled her covers up snugly), and asked me if I had made up with the cat. “We don’t have a cat,” I said, “but here’s Jetta,” and I laid her hand on her little poodle. She said things that didn’t make sense, as if she were hallucinating or had been dreaming. She said she sat down and then she didn’t know what happened after that. She seemed to think she was in the doctor’s office but said she couldn’t remember the doctor’s name. She said she was sorry to cause us so much trouble. I said it was no trouble, that’s what we’re here for, to take care of her. When Tess arrived, she took Emma’s blood pressure and it was 155/100, high for her. Tess contacted the doctor and he said to double her blood pressure medication for today. Emma seems to be resting comfortably now, two hours since the event, but she is not sleeping. I am monitoring her until the aide arrives in an hour to feed her dinner and prepare her for the night.

I suppose I sound whiny – or just plain wintry. It’s not meant to be, though it sounds so; I report these occurrences, for you might have experienced similar or may yet, in the capacity of a caregiver, health care professional, patient, or friend of a patient, and my words are meant to be supportive and compassionate: I know, I know, it’s all right. I once worked with the sweetest Mexican coworker, who owned a rancho in Mexico, was illiterate and spoke little English: “It’s O.K. It’s O.K.,” he would say, no matter what happened to cause me great frustration. “It’s O.K.” Then I’d smile. He was so comforting.

As a writer, I am the bridge; I am the messenger. Human life is all about an exchange of information and ideas.

I write these pages here on my blog for the sheer joy of writing. I observe, learn what’s going on, process it in my mind and tell you the story. Thus, I hand you the note, an exquisite thread … binding us. You may unfold it and read it at will; you do not have to respond. I must admit, though, I love receiving your comments. I revel in a good dialog. So, here we are, human beings, navigating our ways through the Brussels sprouts and liver slathered in onions to get to the ice with the burned nuts in it.

I wrote a lot of notes and letters to Emma over the years, and she responded. When I was 9 and my brother 6, she went to the door with her suitcase. She was leaving home. I clutched her arm, begged her not to leave. My brother sat at the foot of the staircase and observed. She was displeased with Daddy. She left. I cried despairingly. The thought of separation yawned into eternity. She spent the night at the YWCA. She came home the next day. One day soon we will be separated for good. I was separated for good from Daddy on September 16, 2004. I still turn to him every now and then to ask him something; then I realize I can’t (I don’t think). Emma is still here, the mechanisms of her body continuing to function, albeit slowly shutting down, yet neither can I turn to her for discussion – mostly she just lies in bed and stares at the ceiling. I must confess I do not contact my friends and family as often as I might; many are gone and more will go.

I will forever be able to contact you, though, telepathically through my writing. Even after I am gone, these words will be here. (Unless you fling them into a flaming hearth or press delete.) One of our health aides says she observes Emma’s eyes following something around the room, and then up the stairs. Maybe it’s the Woman in White, our neighborhood specter caregiver. Up the street, next door to the large yard where the Woman in White commonly walks, lives a Hospice nurse who works with dementia and Alzheimer’s patients. The nurse says she believes these patients do receive visits from these specters. Maybe they do and it is we who need to visit our intuition, so that we will see them, too, when they manifest in our presence.

The days are short this time of year. The heavy drape of night has fallen; the branches of the dogwood outside my window appear as the compassionate, multi-armed Hindu Goddess Kali. If we gaze from a different window, you know, change our mental presets, we could teleport ourselves to the presence of a loved one rather than sending notes through a messenger. Or we could just text them.

–Samantha Mozart, November 7-15, 2011

Concern of our Hospice organization for Emma has fallen through the fissures, because Emma is on a plateau, albeit one running down a slope towards a precipice, where we could slide off headlong, like lemmings, unnoticed. This Hospice outfit treks no tundra, Think of the money. They are lush with new patients. They have reaped the harvest of another Hospice organization that recently shut down. Consequently, our Hospice members phone us to reschedule appointments. I confirm with the caller the new dates I have just recorded on my calendar. Nonetheless, the scheduler neglects thoroughness; therefore, I find myself waiting and wondering for the hour I have set aside while no one shows, only to find that same person showing up unexpectedly another day. “Is there anything wrong?” the person asks, as I’ve just returned from the store unpacking bags of groceries littering the table, countertops and chairs in my kitchen; I lost in a beige sea of emptied recyclable plastic bags floating across the floor, reorganizing the refrigerator and freezer trying to find space for it all. (I have to buy a lot at a time against the event I do not get out again for a couple of weeks, since I do not have a car, therefore have not only to rely on a driver but also on an aide’s being here to attend to Emma.) As soon as I put away the groceries, I have to launder a load of Emma’s clothes and bed linens, and return an important phone call.

“Is there anything wrong?”

“No, it’s just that I can’t seem to get this cakey chocolate off my remote from the bonbons I’ve been eating while warming the couch watching Oprah reruns.”

Yesterday, I tried calling my aunt. She is nearly 98, in a nursing facility an hour from here. I have been trying to reach her for weeks; her phone rings 10, 11, 12 times and no answer. Maybe she cannot get to the phone, as sometimes happens, maybe it is mealtime, maybe she is in the hospital, maybe she has gone over the edge. This time the phone is answered on the second ring. Thank goodness. Oh. It’s another, much younger, woman with a strong voice. She has been there two days. I am so sorry, I say. “It’s all right,” she tells me.

I call the main number of the center. They have moved my aunt at her request. She didn’t like her roommate who kept telling her what to eat. They give me her new phone number. Since my aunt sometimes gets confused, I call the nursing station first and speak with her nurse to find out how she is. “What is your name?” asks the nurse. I tell her. “You are not on her contact list. I can’t give you any information.”

“But, I’m her niece, she is my godmother, she has been a second parent to me.”

“I am sorry; I’ll lose my license; I can’t tell you anything. There are a number of names on her contact list; yours is not one.”

Yet this is the same nurse who was forthcoming with information last winter; and I have been to visit my aunt several times since then, thanks to a kind Hospice volunteer who drove me two hours round trip to see her.

“She could die and the family wouldn’t know!”

“Let me transfer you to her room,” says the nurse. I am too upset. I cannot talk to my aunt in my present state. I hang up. I email my stepmom  and she assures me that I am on the list. She calls my aunt and emails me that she is fine, loves her new room and roommates and is looking forward to my call.

Back in my kitchen preparing dinner, let me get this straight: The doctor conscientiously prescribes medication for Emma. How many times do I have to say to the one responsible for ordering our delivery, “We are running low; we are going to run out; let’s hope there’s no hurricane or snowstorm.” Yet, it runs out. I have to phone after hours, because, remember, I’ve just returned from the store, we’ve had a guest in the house, I am doing laundry and returning an important phone call, then getting dinner ready in time for the aide to arrive to feed Emma; I pour the last pill from the bottle; it drops into the dish for her evening medications, leaving none for the morning.

The answering service says they’ll have to find the triage nurse and she will call me. Finally, a nurse calls. “It’s on the truck,” she says.

“What does that mean?” I ask. It seems a sensible question. Coming by truck from the Yukon or from the pharmacy down the street? The check is in the mail.

“On the truck, to be delivered tomorrow.”

“Well, she needs it in the morning.”

“When does the truck usually come?” asks the nurse.

“In the afternoon.”

The nurse goes on to tell me that if Emma were in sudden pain and she needed medication for that, it would be delivered right away. This is solely a maintenance medication, so it’s not important. –Only that she could get constipated and her intestines back up and she get an infection with her already compromised immune system. I attended an event last week about the evolving legacy of the Coastal Zone Act, hosted by Delaware Wild Lands, whose former executive director and son of the founder I had interviewed a few years ago. He was my age. He died suddenly last year of septicemia.

“Emma is on a plateau,” they told me about a month ago. “We have to ask you: Do you want our visits to be less frequent?”

What are they getting at?  What do they want me to say? Is this an ultimatum? I don’t know how to address this question other than to be straightforward: “I appreciate and can use the support you are giving us now; I can see that Emma benefits by it; but if you are too busy and have more urgent patients to see, I do not want to be a drag on the works; then by all means, decrease the frequency of your visits.”

“Well, we’ll play it by ear,” they say. The next time they visit, arises the same question. Hmmm. I thought I already answered this. I repeat my earlier statements. “And by the way, Emma’s almost out of two of her medications, as I’ve said. Are they on their way?”

“Whatever the computer says,” I am told. “If the computer says you need another shipment, they will come.”

“Um, but what about the human who tells the computer what to do?”

“You’ll get them when the computer indicates. Don’t worry. You won’t run out.” Playing it by ear.

When the nurse calls 20 minutes before her scheduled visit and says she can’t make it because they’ve sent her to the other end of the state, I ask if she wants to decrease the frequency of her visits. She tells me we had decided to play it by ear. I say I need to plan, so I can get things done without interruption, like writing this blog. She says O.K., we’ll decrease the frequency of our visits.

Why did it take three conversations to arrive at that? I have stipulated on each occasion that I do not wish to be needy, tugging on their sleeves when another, distressed, patient needs attention.

This series of events makes me think I am being punished for something I did but I don’t know what. These people didn’t used to be so offhanded.

While I am rehearsing this symphony, let me play this passage: My stepmom’s mother suffered for many years with Alzheimer’s. My stepmom’s sister was their mom’s caregiver, and she experienced many of the same occurrences with agencies as I do now. They place little value on your time, dignity and intelligence. One would be inclined to think they are not smart enough to think we are not smart enough to see through them.

Caregivers from health care agencies, I have been told, are not permitted to tell patients and family caregivers the complete status of the patient or what she might face. How can you prepare for the eventualities without the knowledge to do so? Only Emma’s doctor is straightforward and to the point; his knowledge and advice have supported me through many events and kept me from being blindsided by the changes. This brings to mind Leo Tolstoy’s “The Death of Ivan Ilyich.” Ivan Ilyich, on his deathbed, reviews his own life while he observes the comings and goings and conversations around him: his wife and family avoid the subject of his death, pretending he is only sick and not dying. Only one person sees the reality, does not fear death and can relieve his pain: the unprepossessing servant. Through his servant, Ivan Ilyich realizes that compassion and sympathy mark the authentic life while self-interest marks the artificial.

Frankly, I think the lemmings get pushed.

This manner of handling Emma’s case seems to me they’re saying, “Oh, Emma’s not important, any more. She’s been with us too long. It’s Christmas. We have new toys.” It makes me feel that we are unworthy. Yes, I am angry. Just say what you mean the first time. Don’t be stringing an artificial tree.

I feel so tired. I hate turning on the TV; I can’t tolerate the noise – the commercials every six minutes and the empty-calorie conversations. This attitude towards us – it is all about money, not humanity – makes me want to crawl into my music, turn up the volume and blast the mystic “Prometheus” chord Russian mystic composer Alexander Scriabin (who died in 1915 at 43 of septicemia) used in his work “Prometheus: The Poem of Fire,” Op. 60 (Valery Gergiev conducting), especially the concluding chord of the piece, and not have to listen to my neighbors, the circus people, or this incessant foggy dribble. This mystic chord, it is said, Scriabin favored, often making use of it, and, to me, this is the chord of chords. Many years ago I went in search of the lost chord. Now I believe I have found it. It blasts to smithereens whatever I have been thinking, and fresh thoughts arise from the ashes. I’ll just pull out all the stops and reemerge as an astral soul.

This is my getting an iTude – my friend R’s term for a fresh attitude. He should know, after falling through the cellar door in the alley sidewalk and tearing the pad of his big toe. (He should have been wearing shoes….) Anyway, there’s always more, so here’s this: Alexander Scriabin’s “Mysterium,” or “Preparation for the Final Mystery.”

–Samantha Mozart, November 11, 2011

My web site crashed last week, corrupting my files and disappointingly losing your recent comments. It’s the phantom of my blog, you might suspect, creeping along the catwalks inside my site and nudging something to cause the crash. No, the phantom here is my web host, a guy with a server set on spindles in the middle of his living room. Often when I try to reach him by email or phone, he is out to – well, lunch. There’s a phone number on his email signature, which he doesn’t answer; so I email him to call me. Then he emails me back – probably from his smart phone over a quick burger with leggy streams of lettuce and strings of onion slathered in secret sauce dripping over his wrist and says it’s not his policy to phone clients, at least not when he’s at lunch, which as I mentioned, he always is.

Finally, I did make contact with my web host who admitted he had what he referred to as a “network problem;” that is to say more accurately, his spindles rotted causing his server to drop and roll over on its side, a neurological disorder, one might say. My site was down for 24 hours. You may have noticed. When you navigated to this site all you got was 48-point typeface blaring “Error…”. A few weeks ago, when I went to view my site, I got the message “This site has been suspended,” black small print on a large white page. Uh-oh. Now what did I do? “We had a permission issue,” my web host emailed me. “What kind of a permission issue?” I asked. He responded: “A permission issue is a permission issue.” Of course. “A permission issue over what specific item?” I tried again. I had developed a persistence issue. “A problem with one of our servers,” he acquiesced.

Between restoring my site and dealing with family matters, I have been busy sweeping up and reorganizing my splintered time; every time I sit down to add a paragraph to this chapter, a new pressing urgency falls to my attention.

Following a barrage of my email queries and the web host’s fragmented responses clogging my mailbox, the web host said, “We can restore your site as of our latest backup on October 16,” a week prior to the crash. I said that if that was the best he could do, then, please, go ahead. I had to gather my work from the past week and reconstitute it. The web host added, “Usually the backup will cost $10 and this time I have given it for free. You have to purchase the backup feature next time onwards.” “Why should I have to pay for your mistake?” I emailed back. No reply. I’m in the market for a new web host.

In any case, I have now downloaded Rbrowser, a mystifying backup program for my Mac. As soon as I decipher the code and unravel the operational idiosyncrasies of how to get Rbrowser to crack into my web site file manager and locate the right file folder, I will back up my work. It’s easy, claim the software engineers, just drag it over – um, over? Over to where? Does this application come with a flashlight?

Nora Ephron wrote a New York Times Sunday Review Opinion Pages piece published on October 15, titled “iToo … Could Have Known Steve Jobs. Or Did I?” Sadly, he looked so spindly towards the end of his life. She writes that she often thought of him when he was alive, although never met him in person – she doesn’t think she did – when she was writing at her “wonderful iMac computer.” I often think of him, too, when I write at my wonderful Mac; so I suppose I could say “iToo 2.” Up until my Mac, I used PCs. The last PC I had was fabulous; it had a long life – 10 years – but it became outdated, and all my PCs crashed and got viruses and Trojans. However, there’s nothing spindly about my Mac operating system. It is so stable; it is always here for me, unlike my website server. Well, O.K., sometimes it forgets it has stuff, as in “What iTunes?” But I restart it and then it says, “Oh, THAT iTunes.”

When I was growing up, my father and family called staircase banister supports “spindles” rather than balustrades. Here at our house, Emma held onto those spindles with a grip normally reserved for grabbing wayward kids by the nape of the neck – that would be my brother and me – in preparation for our flogging. Well, O.K., it was a slim, red patent leather belt. But our grandparents used a cat-o’-nine-tails to flog our parents. That’s what our parents told us. One time when Emma was about 8, Nana was chasing Emma round and round the dining room table with this instrument. Look, at least it wasn’t a Catherine wheel. Emma stopped dead and started laughing. “What are you laughing at?!” demanded Nana. “Ha-ha-ha!” said Emma. “You look like an old witch.”

Amazingly, Emma has lived to be 97.

Late this summer, when Emma could no longer climb the stairs, we put her in the hospital bed, already set up in the living room, where she stays most of the time now. Since then, I have observed a notable decrease of muscle mass in her arms and legs. Emma’s legs, in particular, look like very old people’s legs: they look like spindles. Up until this point, she always had amazing muscle definition in her calves and arms for someone her age, I thought.

Now the legs of our teacup poodle, Jetta, have become weak as spindles. She has been in pain for some months. She is 11. I took her to see the veterinarian last summer and the only thing the vet could find was a loose tooth, which she pulled. But, Jetta continued to be in pain much of the time, often as if she had a headache. Then about two weeks ago, she started to skid on the vinyl floors, stumbled up and down the steps and now staggers or walks on a diagonal, like she’s drugged, walking sideways, like a crab. Sometimes she staggers and rolls over, especially if she spots a nice kitty cat and tries to chase it. Yesterday, during our nor’easter, Jetta walked out onto the grass, rolled onto her side and just laid there on the wet grass. I had to stand her up. Today she moves better. Sometimes she just stands there as if someone conked her on the head and she is stunned. I took her back to the vet’s this week, and the vet told me what I suspected, that she’s probably got a neurological disorder likely caused by a brain tumor. There’s no way to know for sure without a $5,000 MRI. So, Jetta is on an antibiotic and prednisone to reduce inflammation. “It’s a Band-Aid,” said the vet. This illness could progress slowly or quickly, paralyzing her in a matter of months. I am watching her closely. The question is who is going to go first, Emma or Jetta? Emma would miss Jetta – she remains aware of the presence of her little dog; and Jetta would be lost without Emma. Jetta is Emma’s dog; Emma got her when she was a puppy, and having bred and raised toy poodles – one a champion –, personally trained and groomed Jetta. For now, therefore, I believe the “Band-Aid” treatment is the best solution. If Jetta seems to be suffering much, then we will have to put her to sleep. Sweet dog, she is – patient and sensible, feisty, with a sense of humor. Jetta watches everything our health aides do and I tell them she writes up notes after they leave. When the aides aren’t here and I bumblingly do something for Emma, Jetta watches closely and it would appear slaps her paw to her forehead and goes, “Oh, no, no. Oh, you’re making an awful mess.” Despite her malady, yet she watches.

I have to watch myself, too. Since our family doctor retired this spring, I have no personal doctor. Finding a good one could take weeks, months, years, if I have time. Emma has had some real doozies – the Princess Doctor who came from Hospice dressed to the teeth and unwilling to do anything but sit neatly in our living room chair – I think she expected me to serve her tea and cakes; and another doctor, prior to Hospice, who couldn’t remember anything – at every office visit I had to correct the inaccuracies in her records. Scary. That’s why I like dogs: they keep accurate records – their noses remember everything.

There was Kolia, my Siberian husky/wolf/German shepherd mix, black with blue eyes and white trim. Let me just point out, it’s disconcerting to have a dog who is smarter than you. How did he know that when I pulled the pink towel from the stack in the linen closet that he must run and hide under the bed so he wouldn’t get a bath? Is it certain that dogs don’t perceive color? If so, then that’s quite a nose. Kolia has been gone since 1984, yet I miss him still. I could write a book about him and his antics. When he was a puppy we lived in an apartment with a little hill in front of it that rose up to the street. We were playing outside and he started to run down the hill to me. He stumbled and rolled over – and over and over all the way down the hill. He thought it was fun and went up and did it again. I could swear he was laughing. Or, at least snickering out the side of his mouth. Often he did that.

I left a roast on the stove after slicing and serving it and we sat down in the other room to eat. “Oh-h-h, for me?” said Kolia. He lifted the whole roast out of the pan and set it on the kitchen floor where I found him eating it. Yes, The Kitchen: dog’s favorite place and mine. As I stated in Chapter IV, “Why Salmon Salad and Mozart,” I like to eat.

Here, then, is a recipe that will put meat on your spindles – Butternut Squash Soup. I created this the other night and it is so-o-o good, French chefs, step aside:

Note: I don’t measure, usually; so these measurements are approximate. It’s more like a little bit of this and a lot of that; whatever I have on hand that works.

1 butternut squash, baked whole, for about an hour at 400 degrees, until the meat is very soft, then cut in half lengthwise, seeds discarded
1 small, thin sweet potato, about 5 inches long, baked, and then skin discarded
1/3 large sweet onion, chopped
2 large, red “A” potatoes, skin on, chopped
Generous splash of extra virgin olive oil into a large soup pot
Pinch of sea salt
Pinch of dried chili pepper flakes
Generous amount of granulated garlic or 3-4 cloves of fresh garlic, minced
1 12-inch sprig of fresh rosemary, cut in two to fit in the pot
1 tablespoon of fresh thyme leaves
1/2 pound of butter, unsalted
24 ounces of chicken broth (I use Imagine brand)
Vegetable broth – here I used about 1/3 cup of artichoke broth left from an artichoke I steamed and then saved the broth in a Mason jar in the fridge
3 cups of low-fat buttermilk (make sure the kind you buy has no additives)
2 tablespoons dark brown sugar
2 tablespoons cinnamon
1 teaspoon nutmeg
sour cream
bacon bits (I buy my bacon bits from the supermarket salad bar)

Splash olive oil into the pot, add onion, red potatoes, salt, pepper flakes, garlic and rosemary. As onion and potatoes soften and the oil cooks down, add the butter.

When the butter melts, add the vegetable broth, chicken broth and most of the thyme.

Bring to a boil and then simmer until the vegetables are tender – about 15 minutes. Remove the rosemary and discard.

Let cool a bit. Then add soup mixture to a blender together with spoonfuls of cooked squash and sweet potato, and brown sugar; puree. When you run out of enough liquid to operate the blender, add buttermilk, until when you’ve pureed all the soup ingredients, you’ve added about 3 cups of buttermilk. (If you have a hand blender that you can just stick into the pot, all the easier.) These amounts of liquid will vary according to the amount of solid ingredients. The desired end is for the soup to be thick and rich.

Place the pureed soup back into the pot, heat, and add cinnamon and nutmeg to taste.

Serve in soup bowls topped with a generous dollop of sour cream and a sprinkling of fresh thyme leaves and bacon bits. Serves 4-6.

One of the many benefits of having a dog is that they vacuum the kitchen floor when you’re done cooking. They also take sandwiches out of little kids’ hands. ~

Music comes to us on spindles, too – in the form of compact and vinyl discs.  Rock musician Daryl Hall has a country house kitchen where he and fellow musicians play music that they perform for the Internet. He started this website a few years ago, “Live from Daryl’s House.” Now he has syndicated this music camaraderie for TV. He and his fellow musicians play songs, tell stories about their musical adventures and musician friends and they invite a chef in, prepare food and eat it, sharing the recipes with us viewers. It’s like he’s created a musical blog from his house. He’s such a regular guy, it’s like you’ve gone over to your neighbor’s house and sat in. This is so cool, especially if you like the Philadelphia sound, as I do. In this episode for which I’ve provided the link is a fresh garden salad that you can eat with your butternut squash soup. I always wondered what to do with that old, hard loaf of bread. This chef shows us.

http://www.livefromdarylshouse.com/currentep.html?ep_id=62

Cheers!

–Samantha, October 30, 2011

I follow a blog written by a woman whose friend scored tickets to the New York Film Festival this year. So, naturally, she has been writing posts about all these fabulous films she has seen over the past days – the new HBO two-part documentary George Harrison: Living in the Material World, directed by Martin Scorsese; Béla Tarr’s The Turin Horse; Lars von Trier’s Melancholia; and others.* I mention this because my recent film viewing experience has been quite dissimilar. To wit, just the other night, I finally got around to watching The Phantom of the Opera for the first time, the movie musical, on DVD. It is the first time I have witnessed the story of The Phantom of the Opera in any form. I have not read the book. When I lived in Los Angeles, I had wanted to see the performance at the Shubert Theatre in Century City. I heard that the phenomenon of the chandelier coming out over the audience was quite, well, striking. But I never got there. An L.A. friend took me to lunch around that time. As soon as we sealed ourselves into his sleek, black sports car, he said, “Listen to this.” He reached forward and pressed a button on the dash. He maxed out the volume: The Overture to The Phantom of the Opera. I fastened my seatbelt. Wow! Some catharsis.

The phantom of the opera made me think that here you are. You may be padding around in the alcoves, chambers, catwalks and labyrinths – in the latter, among whom Stephen King calls the boys in the basement – of my blog and I do not know you are here. You are here watching me. You are here learning and knowing all about me while I know nothing about you. You are The Phantom of My Blog. You may be teaching me, even, and I receive your teachings mystically. While I may experience a presentiment of your presence, I do not know for sure that you are here. You? I listen. The power of the music of the night.

Emma may experience something similar when our chaplain and our music therapist visit by her bedside. She will, as they come near her, stretch a leg, open an eye, and then turn her head away and close her eye. The chaplain observes that she is probably entering into a beginning new phase, the cocoon phase. We watch over her, watch her spirit, know who she was, where she came from, the songs she sang, the music she played, the pictures she painted, the parties she hosted in her lifetime, and try to discern where she is now, where she is going. She won’t verbalize it for us, She just turns away, but it appears she experiences a heightened sensation of our presence.

Here at home I’m dealing once again with the phantom Hospice aide. Granted, she requested time off; but no one told me – until late afternoon yesterday when our Hospice social worker/bereavement counselor, Geri, emailed me to see if I had been notified that this aide would not be showing up today nor for her following two scheduled visits. No one is coming to replace her. Fortunately, I have the state Attendant Services health care aide coming. She and I have to cover for the work the Hospice aide does. Some things won’t get done. But, at least I will have someone to bathe Emma and turn her in bed, requiring more physical strength than I have. In any event, I am not paid. I could be editing and publishing my book so that I can market it and you can buy it, but I am attending to health care instead. This could be worse. Up until two and a half months ago, we had no Attendant Care Services. If such circumstance yet existed, I would have no one. This is stressful. I make plans: I made plans a week ago for someone to take me to the store on one of the days the Hospice aide will be absent. I have to rearrange my schedule and that of the person driving me; this is why, when I go to the store, I must ensure that our provisions are well-stocked, just in case. If I had a car, I could be more flexible; but since I don’t get paid…. Maybe they’ll change the rules so one can buy a car on air rather than with money – or given our weather conditions since August, buy it with raindrops.

Well, I’m getting a bit jaded presently. Sometimes I just tire of it all. I think the Phantom of the Opera was jaded, too, after the abuse he’d endured in his lifetime. I liked him. I thought it sad that in the movie Christine went off with her noodly childhood boyfriend. I thought the Phantom had more character substance. He could be a bit nasty at times, though. Maybe it’s because he got impatient.

The ghost existed, wrote Gaston Leroux, whose characters recount the story. Workmen, when digging in the substructure of the Opera, found his corpse. I know this, as you may, because I just downloaded the story to my Kindle, free from Amazon.

I’ve tended to enter into my own cocoon phase recently. The dumbing down of America gets to me. My Attendant Care Services aides, who have to document their hours on a time sheet, mix the forms of hours and minutes (i.e., 21:15, twenty-one hours and fifteen minutes) with hours and fractions of an hour (i.e., 21.25, twenty-one and one-quarter hours), and then try to total the columns. I correct the figures and then fax the sheets in to our fiscal management organization accountant (?) who gets the figures wrong and misspells our names. Then, too, faxing is not that streamlined for me, given that my fax machine was unearthed from an archeological dig. Our circus people neighbors running rings around us, back and forth, back and forth diagonally across the street between their two houses and proclaiming empty calorie conversations at stage voice decibels to the person seated next to them on the porch across the street make it a good thing Emma is hard of hearing and her ears are impacted with wax.

I shut my windows and go to my studio in the room upstairs at the back of the house, sit at my keyboard, and look out at the dogwood tree with the vermillion leaves, absent of the berries the birds took, and the squirrel bouncing up and down on the branch in the wind. I look in at my blog and contemplate your presence. I listen for the music.

–Samantha, October 14, 2011

*Lame Adventures, http://lameadventures.wordpress.com

This day the air smells like drying leaves. As Jetta, our teacup poodle, and I walk along Mustard Lane, the day is crisp and dry under a cerulean sky, incandescent within the embrace of a bone-warming sun. The last of the summer crickets chirp their final songs, sluggish from the effects of our cooler nights of October. The leaves on the dogwood outside my upstairs studio window have turned cochineal red. A flock of speckled birds came by last week and swallowed every bright red berry on the tree in a half hour, their recapitulation of years past.

I lie awake in bed upstairs at 3:30 a.m. and I hear Emma coughing downstairs in her hospital bed in the living room. I go down to check on her. She has turned on her side and taken the covers with her. Her back is bare but for her nightshirt. I readjust the blankets so she is snug and warm once again. I go out and sit on our front porch behind the 10-foot walnut tree a squirrel planted in our flower bed two years ago when she exchanged it for a tulip bulb. There is little breeze, yet I hear the leaves drop in slow succession – thack … thack … thack … thack-thack. Some are still green – dry with black edges and brown and yellow speckles. A crimson leaf, and then another and another drop from ornamental plum trees lining the brick sidewalk. I feel centered and peaceful at this hour. The circus people, my neighbors two doors up and also across the street, who run rings around us and whose voices could be heard in the back row of the fourth balcony, without a microphone, are asleep, rejuvenating for the next show.

This is my favorite time of year. It could be autumn year round, as far as I’m concerned. But, then, we’d run out of leaves.

Now I sit at my computer to write this. I glance at my surge protector down in a dark corner on the floor, accommodating a tangle of electronics cords. It tells me it’s working, lit up with red and green lights. It reminds me of the city at night in the rain in the winter. That will come. In the rain, the streamlined trolley cars, green and cream with the orange stripe, like a girth holding together the other two colors, slished past Aunt Mary and Uncle Will’s house in West Philadelphia, where they lived when they were my age and for many years before. Our family sat in the formal parlor behind the lace curtains and fringed shades with the tassel pull cords – like Eeyore’s tail – that shielded us from the view of the trolleys and the slick, cobblestone street. And their cuckoo clock: when our great aunt and uncle signaled, my brother and I would rush between the heavy crimson velvet curtains into the dark dining room to watch the wooden bird emerge and proclaim the hour.

Emma’s music therapist, a recent Temple University graduate, where she studied opera, told me that the city of Philadelphia is refurbishing old trolley cars for use. “Really!” I said, my eyes lighting up. “You mean those big, old, heavy, boxy cars that trundled along?” No, the streamlined trolleys, she informed me. Well, when I was a kid, they were the new trolleys. They were built in the 1930s. When my father was a boy in West Philadelphia, he knew the number, schedule and route of every trolley car that passed beneath his family’s upstairs sitting room window. After he retired, he built model trolley cars. When he died at 90 in 2004, we family said he went to trolley car heaven. My sister-in-law carried a keychain with a trolley car on it, a gold color with red and green lights. In the cemetery at Daddy’s funeral, the trolley car fell off, and she had to look around for it in the grass on that hill overlooking the Schuylkill River.

We never ate at Aunt Mary and Uncle Will’s house. I used to wonder what they ate. We ate at other family members’ houses, but not theirs. I knew they had a kitchen, through the swinging door, behind the dining room, and that they had an ice box in there and a stove, but I don’t know what they ate. There was never any sign of food or dirty plates. They spent most of their time upstairs in the front room, the sitting room, watching quiz shows on TV, when they didn’t have company.

At Aunt Mary and Uncle Will’s, the cuckoo clock was the main entertainment for my brother and me; that and the owl on the parlor mantelpiece whose eyes lit up red.

My eyes lit up red when yesterday morning the new aide, who’s been with us two weeks, snapped, “I’m not here to feed the dog, too!” All she had to do was take Jetta off the couch and place her on the floor, and then place her bowl of dog food, I had already set out, on the floor next to Emma when she sat at the table to eat. I explain all duties to the candidate before she is hired, and ask her if they are agreeable to her. I have invested six years in caring for Emma, picking her up off the floor when she fell, bathing her, dressing her, assisting her with eating, wiping her nose, wiping her butt – it is at moments like this latter that the gentle, patient Dr. Patel seems to have a knack for phoning to set up an appointment for a visit.

Watching the leaves drop, listening to the sluggish chirp of the last summer crickets, observing the little things, the subtleties: I am thankful that, in addition to our Hospice nurse, I have two aides, our Hospice aide and another aide who has been with us a year and a half, who notice the small changes in Emma’s condition, or conditions that occur in old people that tend to be brushed aside by the medical profession; for example, Emma’s ears are nearly completely closed and impacted with wax. While I am aware that wax builds up in her ears, as in those of most elderly people, I must confess, I don’t go looking in Emma’s ears regularly, but these two aides do and pointed out the buildup to me today. At this stage, I don’t know what can be done to clean them out, but I will ask. In the past, I have thought of ear candling, because that seems the most effective method of clearing out the ear and sinus passages; and I bought an ear candling kit a few years ago. But, then, I was afraid that if I attempted the procedure myself, that Emma would haul off and whack me and then I’d drop the candle and burn down the house.

Yesterday morning my new aide – I’ll call her Sally Slacker – didn’t put Emma’s undershirt on, but left it folded in the chair by her bed. How could one not notice this? It’s like getting yourself dressed, leaving the house and getting in your car and driving somewhere without putting on your pants. No undershirt is just what we need with the weather changing and Emma’s lying in bed most of the day and being at risk for a pulmonary infection. And since Emma has been coughing lately – I think because her sinuses are draining due to the change in weather – I am watchful. She has prescription cough medication I give her that dries that up instantly. I have been engaged in a surge of interviews to replace Sally Slacker. Would that there were some magic potion to instantly remedy that. But there is none.

Emma is still a human being and deserves to be cared for like any other human being. She is the sluggish cricket, the trolley car that cannot be refurbished, the tree whose leaves will not bud again next spring.

–Samantha, October 10, 2011

When I awoke this morning, down the hall bright sunlight streamed into Emma’s bedroom, splashing elongated diagonal yellow windows across her rose-colored carpet. Of course, Emma no longer sleeps in that room. She sleeps downstairs in the hospital bed in the living room, the proximity of the Victorian houses on either side of ours blocking much of the sunlight there. But, I remembered this morning how Emma loved the sunlight and how she would arise on a morning, greeting the bright sunny day, cheerful, feeling renewed. She’d greet me with a bright smile and a singing voice “Good morning, Mary Sunshine!” And then, when she had overnight guests at her house on the beach in Avalon, New Jersey, plug in the percolator and rustle up the pots, pans, egg beater and spatula, and whip up scrambled eggs, scrapple, sausage, toast, fruit and orange juice for everybody before they headed for the beach.

This morning, the sunshine was there for Emma, but she was not.

I am always amazed at how bright, cheerful and energetic Emma – and some of my odder friends – could be at the ungodly hour of 9 a.m. I have never been one of those morning people.

Maybe this is because I was born in the afternoon. Even that day, I wasn’t into getting up and out too early. I was supposed to have been born on Emma’s birthday, but I showed up two days later. I’ve been pretty much late for everything since. Better late than rushed, my philosophy.

Emma died when I was born. She forever held her doctor in the highest esteem because he brought her back. She nearly bled to death. My father, my uncle, my aunt – the whole family were there in the Fitzgerald Mercy hospital outside Philadelphia giving blood. I came out blue with the umbilical cord wrapped around my neck. So, you could accurately describe me as a claustrophobic late person. I might point out here that Emma was late for most occasions, too. The family called her “The Late Mrs. S—–.” And she’s still here, on this planet 97 years, sans sea breezes and morning sunshine, but with me, Mary Sunshine.

Today would be my dog Butch’s birthday. We got him when I was 2. I remember the ride home with him in the back seat of the black Packard with my grandfather.

Me. my brother and Butch, 1950

My uncle drove. My father, his brother, sat next to him in the passenger seat. Butch was a collie/shepherd mix, with black long hair, tan lower legs and a white “shirt.” The family retold the story over those early years of this puppy sticking his paw in my grandfather’s coat pocket. Well, Granddaddy got sick when I was 6 and was confined to bed. I asked if it was because he hadn’t eaten his lunch. They said no, it wasn’t that. He died in October that year. I was just 7.

Granddaddy didn’t drive; until my uncle was old enough to drive, Granddaddy had a chauffeur, who, they said, polished only the side of the car when it was parked in the driveway that faced the house. Granddaddy worked at a bank and had true banker’s hours. When I was about 3 or 4 and visiting my grandparents, he’d ride the bus home from work. He’d get me up from my nap and announce that he was taking me out with him, leaving my grandmother and aunt appalled that they hadn’t had time to brush my hair. He took me for rides on buses, trolleys, trains and the passenger ferry across the Delaware River. I remember standing beside him, looking up at him, talking to him, probably asking questions, at the bus stop. When I was 2 and we were staying in the family Sea Isle, New Jersey, summer home, he walked me to the corner store to buy the Sunday paper. He gave me the rings from his cigar wrappers and I put them on my fingers. He took me everywhere with him. To this day, I don’t know what he died of. As much as I asked, the family always passed it off. He had a drain in his back. That’s all I remember.

In later years, my job was to walk Butch. Butch was my buddy. I took him everywhere with me. When I was 11, I came home from school one day, looked for him, said to Emma, “Where’s Butch?” “Oh, we gave him to the SPCA,” she replied. “He was too much trouble, cleaning up his dog hairs all the time. He’ll go to a good farm.” I cried for three days.

My Nana, Emma’s mother, as I’ve told in a previous chapter frequently took her rugs out and hung them over the clothesline in the back yard and beat them with a big club, a rug beater – it always made me think of the ace of clubs on a deck of cards. These were big, 9-by-12 living room and dining room, gray-patterned wool rugs. She’d roll them up and somehow carry them outside. (In between these occasions, she vacuumed them with the Hoover upright with the headlight, when she wasn’t washing her long Victorian windows inside and out, upstairs and down.) Emma would have pulled the rug out from under me a year or two after we moved into our house here, before I had saved the money to return to Southern California. She was looking into assisted living quarters. But, then, she got dementia and forgot.

It was October 1967 when I stepped out onto my patio in Redondo Beach, California, where my husband, baby daughter and I had moved in June when the U.S. Navy deployed him to the South China Sea, and saw the mountains across the Santa Monica Bay above Malibu for the first time. The perpetual sea mist had lifted and there they were: the Santa Monica Mountains, as if they had been

mothballed and someone had set them out for the first time in months. I hadn’t known I had a view of them.

Today, so many people don’t look beyond the patio of their smart phones to see the sea mist lift. Too busy walking, heads down, texting, they never notice the cardinal in the dogwood tree laden with snow, never see the chattering squirrel running along the wire, never hear the robins chirp to one another on a summer evening, never see me sitting on my green and white front porch behind the walnut tree the squirrels planted in my flower bed there, watching them. They lead gray, superficial lives filled with pages of ticked off boxes on a form; their days covered in a layer of high, thin clouds through which the sun struggles to shine in a hazy glare.

Butch would be 68 today, old even in non-dog years. E. M. Forster, notably in two of his novels, A Passage to India and Where Angels Fear to Tread, gets his characters into a crisis; they debate which way to turn to resolve their dilemma. Then a wise one says, “What does it matter which you do? The outcome will be the same.” That outcome is not one the reader – nor characters living real lives – might expect. The point is not to get so stressed about it, to just flow with the events in your life. I think should I heed this advice, I would learn patience. My friend, a spiritual teacher, who just married the love of his life, said to me today, not particularly speaking of his own situation, that regarding the one you are in love with … “what’s age got to do with it?” Oh. True. His supportive comment and incisive truth extracts a huge obstacle to a union.

My dilemma is this, though: Once this Hospice thing is over, this team of aide, nurse, social worker, music therapist, chaplain, volunteers and doctor will no longer have contact with me; the circle of light closes and they just fade out. The title reads, “The End.” I’ve told them I don’t want to never see them again; I have made friends with them, as I have with many of my business associates over the years. It seems natural: if you really like someone and you share common interests, oneness of mind, that you’d want to become friends. So, when I lose Emma, I lose everything and everyone. I am trying to give myself a spiritual upgrade here, about this. How can I watch them walk away and, myself, go with the flow? Somehow, this potential situation, to me, flies in the face of the human condition.

Our planet rolls from the golden sun of morning to the bronze light and long shadows of late afternoon, and as it continues its turning, pulls out the rug of the earth from under the sun, and then it is night, dark, pitch black; and out of those dark energies, slowly appears the moon. “Go to it,” a voice says from somewhere over my shoulder. And I go to enter within the embrace of its tender, silver and blue arms. In that place is a time for reflection. Maybe this is a mystical experience. As the sun sets, the sun also rises.

–Samantha, October 6, 2011

We’re presently enjoying an entr’acte, here, a quiet stage. So, I thought I’d take this time to compose an overture.

When Thomas Jefferson served as American envoy in Paris in 1786, he encountered beautiful, Anglo-Italian artist Maria Cosway. It is said he fell in love with her the day they met. She had accompanied her husband, miniature portrait painter Richard Cosway, to Paris. The Cosways made their home in London. She was an accomplished painter, composer, musician and society hostess. She and Jefferson took long walks together, toured the sights, and engaged in brilliant conversation. After she returned to London, he wrote, on October 12, 1786, his well-known 4,000-word letter to her, “Dialog Between My Head and My Heart,” marking the beginning of a lifelong correspondence between them until his death in 1826. In his concluding paragraph, he writes, “As to myself my health is good, except my wrist which mends slowly, and my mind which mends not at all, but broods constantly on your departure.”

This is the most beautiful love letter. I can well relate to Jefferson’s feelings, to where I could write a love letter on the same thought. On the other hand, if I could write as well as Jefferson, they would have asked me to write the Declaration of Independence. Anyway, I wasn’t available at the time (unless there in an earlier version of life).

Jefferson wrote his letter with his left hand. He dislocated his right wrist in September of that year apparently when he attempted to jump a fence in the Cours-la-Reine. His injury cut short his sightseeing with Maria Cosway, for he was forced to remain housebound for a month. The two surgeons who attended him did not set his bones well, thus he suffered wrist pains for the rest of his life.

Thomas Jefferson and Maria Cosway saw each other occasionally again in the autumn of 1787 when she was visiting Paris. She broke their final appointment on the morning of her departure, so they had no final farewell. Their romance lasted more than three years, recorded in their private billets-doux.

Back in his beloved Monticello, Thomas Jefferson had his library. Just think, though, that in his love for books, he had no access to the great literature of the 19th century. He loved music and played the violin until he injured his wrist. He couldn’t visit an online music library and download a song, but, in Paris, could attend the Academie Royale de Musique and listen to a Gluck’s Orphée et Eurydice Overture. Yet he could not watch a performance of the magic-fingered “rock star” of his time, Niccolò Paganini, still a child. And, I can’t imagine living without the music of Chopin. He could not attend a performance at the Paris Opera Palais Garnier, not yet built, nor listen to Tchaikovsky’s 1812 Overture – Tchaikovsky hadn’t been born. Mozart had only just completed his opera Le Nozze di Figaro in April 1786, with its popular overture, and conducted the first performance on May 1 in Vienna. Jefferson’s fractured wrist postponed his trip to the South of France, and in any case, he couldn’t slip over to Israel on a side trip.

Napoleon III commissioned the construction of one of the grandest European theatres, the red and gold Paris Opera, the Palais Garnier, built from 1860 to 1875, after an assassination attempt on him and Empress Eugénie following an evening at the opera when their carriage passed through the rue Le Peletier. The emperor wanted a protected side entrance. (Another, often compared theatre, is the blue and gold Mariinsky in St. Petersburg, opened in 1860.)

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The Paris Opera Palais Garnier

Of the Paris Opera, composer Claude Debussy is quoted as saying, “To the uninformed passer by, the Opera looks like a railway station…inside one might be forgiven for thinking it was the central lounge of a Turkish bath.”

Click to see enlarged image (well worth it): http://thescheherazadechronicles.org/wp-content/uploads/2011/10/Palais_Garnier1.jpg

The Opera’s cellar was built on top of an underground lake and stream. Writer Gaston Leroux explored the outer parts before the opera house was completed, including the cellar, which at one time was used as a torture chamber.

Click this link to see images of the Mariinsky Theatre. (No wonder the peasant uprising.) http://www.balletandopera.com/index3.html?sid=9D7B5zC28ak5K71ny3N1%26%2312296%3B=eng&page=z_mar_opis_virt_tour&feedback=1

In 1896, a counterweight fell from the six and a half ton chandelier killing a patron. This tragedy sparked Leroux to write The Phantom of the Opera, a horror romance describing the end of a ghost’s love story. Supposedly, the Paris Opera ghost does exist. Doesn’t every theatre have a ghost?

Today the Paris Opera uses the Palais Garnier mostly for ballet performances.

The great 20th century violinist Yehudi Menuhin performed at the Academy of Music in Philadelphia. Emma was in the audience to see him in the 1930s. She saw Benny Goodman and his band perform at Carnegie Hall in New York City around then, too.

When I was a teenager, Emma took me to see Gene Krupa playing drums on the Steel Pier in Atlantic City. I stood right in front of him. Some years later, I stood in front of Eric Burdon at the Whiskey a Go-Go on the Sunset Strip. We could have shaken hands. Another time, I sat in the Los Angeles Music Center Dorothy Chandler Pavilion orchestra section, near the stage, to see a young Zubin Mehta conduct. I took my daughter. She was elementary school age, the present age of my two granddaughters. We were amused by the cellists, when idle, making subtle humorous gestures across to the violinists. What can I say? That’s L.A., laid back. They performed Tchaikovsky’s fifth symphony. We, the audience, gave Mehta a standing ovation.

I’ve gone off on a nerdy binge here, but that’s me. These – books and music, especially classical music and ballet – are my greatest interests, and I tend to indulge. In this screen-time age (I’m putting this politely), I have few people with whom to discuss these interests. To my great pleasure, the other day when our music therapist visited Emma, she and I conversed animatedly about this composer and that classical piece; and she suggested I read Alex Ross’s The Rest Is Noise. When this book was published a few years ago, I had wanted to read it, but then forgot about it. So, before I could say Jeff Bezos, I had it downloaded to my Kindle.

Emma read to me, recited nursery rhymes and sang children’s songs, such as “Frère Jacques” and “Horsey, Keep Your Tail Up,” from the time before I was born. My father had a huge collection of classical music and big band recordings. We had a black Steinway baby grand in the house. Both parents played and my father, who also played the clarinet in his youth, would sit at the keyboard and compose. He wrote a novel, too, but when he sent it out to be published, it was rejected. Of course, Emma gave me piano, ballet and tap lessons – my teacher was Jeannette MacDonald’s sister, Marie; and my daughter and I studied ballet together for years. We became family with our fellow dance students, some remain our friends; and our teacher, who had danced on Broadway, became a master teacher with American Ballet Theatre. (Our teacher for the first two years had danced under Balanchine at the New York City Ballet, thus threading our teacher lineage all the way back through Diaghilev to the Mariinsky.) From the time I learned to read, I always had a book in my lap, and I wrote.

Love letters come in different formats. They come in songs, for instance. “This is a good song,” a guy I worked with would say to me. And then he’d sing a line of the lyrics. He is a rock musician. When he first came to work at our company, I didn’t want to have anything to do with him; I didn’t want to have to work with him. But our superiors forced us together, like an arranged marriage. We found we had a lot in common – love of the Beatles, and we both had huge record collections, for example. To my surprise, we talked, laughed and had a lot of fun together. He pursued me and pursued me, always coming to talk to me in the catering warehouse where we worked. He made overtures. The radio was always on, tuned to a pop music station. I’d catch myself talking to him in my mind when I was in my car or at home, when he wasn’t around. I couldn’t figure out why I did this, why I felt this way, and I couldn’t figure out why he continually pursued me, always by my side, always talking to me; he was married. And then I realized I was in love with him; it was probably love at first sight, but I didn’t think about it, because, well, he was married.

“This is a good song,” he’d say, and then he’d sing the words conveying his feelings for me. I guess we women like to think, Well, he’s going to divorce his wife and be with me. But it didn’t work out that way. His four-year-old daughter needed an operation, so he had to find a job that offered medical insurance. One day, soon before the final curtain dropped, “This is a good song,” he said, when it came on the radio: How can you just walk away from me, when all I can do is watch you leave? … So take a look at me now, ‘cos there’s just an empty space. And there’s nothing left here to remind me, just the memory of your face… You’re the only one who really knew me at all. (Phil Collins, “Against All Odds”) I stood there one day and watched him walk away: I never saw him again. That was 23 years ago.

It seems like yesterday. The song of life plays fast; before you know it, it is almost over. Seldom is there a refrain. If there is, I know I’d better sing it. As the curtain rises on my third act, I make this overture to you. The lyrics go that these days I choose my friends carefully. If I meet you and I like you, I invite you into my life, like picking notes from a basket to form a new measure. I want to talk to you, laugh with you, get to know you better.

Am I picky or simply discriminating? I have the honor to know some very special and unique human beings, some who have been my friends for 40 years. Among the things we have in common is agreeing that we don’t know how we got this old. It is comforting to know that Zubin Mehta is older than I. Well, and Thomas Jefferson – way older. Trust me on this one.

–Samantha, October 1, 2011

My boyfriend, George, died of a malignant brain tumor 15 years ago. He was a physicist, and MIT graduate, a systems analyst and a software engineer. He cooked me delicious dinners, cleaned my house and read to me (we read to each other). He had a great sense of humor and a hearty laugh. He especially liked Polish jokes. He was half Polish. He was an exceptionally capable person, always ready to help and there to do. When he began to experience difficulty thinking, he didn’t know what was wrong with him. Neither did the doctors, until his landlord found him unconscious and he was taken to the hospital and they found the tumor. By then, it was too late. He lived in a nursing home his last months, surrounded by his loving family who brought in Thanksgiving and Christmas dinners to celebrate with him.

George had the brain tumor while he was helping his sister and family move across country, and during her bout with lymphoma and stem cell replacement surgery. But he didn’t know he had the tumor then. His sister recovered and is living a normal life. About 20 years earlier, their father, retired from lifetime work in a Pittsburgh steel mill, died of cancer.

Emma discovered a lump in her breast when she was 84. She had a lumpectomy followed by radiology but no chemotherapy and recovered quite rapidly, to the doctor’s surprise, for someone her age.

My friend Martha who drove me to the store regularly this spring, after my car quit running, is married to a man who has a blood cancer. Paul is able to lead a normal life presently, but has to go to Johns Hopkins Medical Center for treatments periodically.

I received an email from Paul and Martha about the Leukemia & Lymphoma Society’s Light The Night Walk, “finding better treatments and cures for blood cancers so patients can live better, longer lives”. The walk takes place October 22, rain or shine, in Rehoboth Beach, Delaware, for you who live in the greater Washington, D.C./Baltimore/Delaware area. Registration begins at 5 p.m. and Walk Opening Ceremonies begin at 7 p.m., at the Rehoboth Beach boardwalk, Village Improvement Association.

Here is the main link to the Light the Night homepage: http://www.lightthenight.org/.

Here is a link to Paul’s fundraising page, if you want to contribute: http://pages.lightthenight.org/de/Boardwlk11/PWagner. This is the link to Paul’s bio: http://www.lightthenight.org/de/localchapter/patients. And here is the link to Delaware Light the Night: http://www.lightthenight.org/de/.

The email letter goes on to say, “I’m asking you to help by making a tax-deductible contribution!  Please use the link in this email to donate online quickly & securely.  You will receive an email confirmation of your donation as soon as it is made. I thank you in advance for your support which will make a difference in the lives of thousands of patients battling blood cancers. ,,, Martha and I are also inviting you to join our walking team called Tern About Time. We are walking at the Rehoboth Beach Walk…”.

An important cause. Join in if you would.

–Samantha, September 28, 2011